A New York woman slowly going blind and deaf thanks to an extremely rare condition has opened up about her struggle to cope with her disabilities in a new memoir.

Author an activist Rebecca Alexander, 35, said the signs of her condition were already appearing shortly after she turned 13 and would no longer respond to someone calling her name from another room.

Alexander suffers from Usher syndrome, which afflicts about one person in 23,000 in the U.S. and for which there is no cure and little research available, all detailed in her book 'Not Fade Away: A Memoir of Senses Lost and Found.'

Author an activist Rebecca Alexander, 35, said the signs of her condition were already appearing shortly after she turned 13 and would no longer respond to someone calling her name from another room

'Fifteen years ago, I was told that, by now, there would be something to
help stop the progression of this, and potentially even a cure,' she tells the The New York Post. 'Part of me feels really angry that people could be so careless,
to promise something like that.'

But sadly that was not to be the case.

'The words pounded like a drumbeat in my head,' she remembers of her diagnosis. 'No cure, no stopping it.'

She grew up in Oakland, Calif., with two brothers, and though their father had fits of mania and depression and her parents divorced when she was 12 she still describes her childhood as 'idyllic.'

But as she got older, he parents argued over how to deal with her diagnosis with her father wanting

Alexander's new book 'Not Fade Away' will detail her struggles with Usher syndrome

to keep the truth from her as long as possible so she could enjoy her childhood.

'At the time, my night vision was the most significantly impaired,' she says. 'So my dad said, ‘We can tell her she has difficulty
seeing at night, and in time we’ll get to that place where we’ll tell
her more.’'

To this day she is uncertain exactly how her parents finally revealed the truth to her, only being driven to a conference for the Foundation Fighting Blindness at the age of 15.

The trip was her first exposure to guide dogs, canes, and people her age who were already completely blind.

She remembers being unnerved when a woman who's vision was impaired was unable to maintain direct eye contact in a conversation as her eyes drifted to the right.

'I remember looking at her and wondering what she could see,' she says.

She describes her site today as 'the end of one of those old Warner Bros. cartoons on TV, where Bugs Bunny sits in the center of
the screen waving goodbye as the picture becomes an increasingly smaller
hole, until it’s finally gone, leaving only blackness. That’s all,
folks.'

It's a life she once thought she'd rather die than deal with.

'I just couldn’t imagine living into adulthood,' she tells The Post. 'I couldn’t imagine what that would mean.'

She dealt with the fear by living hard during her teenage years, dating, getting a driver's license, and insisting she attend college across the country.

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After one particularly bad fight with her high-school boyfriend and too many drinks the summer before she was to leave, she fell through an open window 27 feet to the ground and ended up with almost every bone broken.

'All of my friends went off to college, and I’m finding out my
high-school boyfriend is hooking up with chicks and joined a fraternity
and is getting s—t-faced all the time, and I’m fully casted,' she recalls.

If there was a silver-lining to the year-long rehab - and Alexander is described as nothing if not positive - it was that she says she gained a better sense of comfort with being by herself.

'I didn't know that I was as comfortable, before,' she says, 'with loneliness.'

When she did make it to college, she tried to keep her condition secret, sliding the hearing aids she now wearing beneath her pillow when she had a boy over or hiding them under her long brown hair.

Alexander says she infuriated by viral videos of cochlear implants she says mislead people about how they work

'I remember when I was a little girl and we went skiing and I saw
someone wearing a ‘blind skier’ sign on their back,' she says. 'I
felt almost humiliated for that person. It was such an exposure. Now, if
I went skiing, that would be me.'

She says the first time she had to use a cane was exhausting just explaining her condition to friends who had never seen her use an aid before.

'I’d almost rather wear a f—king sign that says, ‘I have a degenerative
condition that’s making me lose my hearing and my vision — that’s why
I’m using a cane.’ But whatever,' she says.

Now she using a mini goldendoodle to help make her way through the city and lives in a one-bedroom apartment on New York's Upper East Side.

She has a private practice as a psychotherapist and moonlights as a spin instructor, and has two master's degrees from Columbia.

The city has unique hazards for the blind. She's been hit by cabs and had her feet run over and has fallen through one of the metal double doors that marks so many streets.

She sometimes worries dates from J-Date or Tinder might Google her and get scared off and was stood up just last week.

'At this point, it's a free-for-all,' she says.

Alexander She has a private practice as a psychotherapist and moonlights as a spin instructor, and has two master's degrees from Columbia

She also says that the viral videos of children hearing for the first time with cochlear implants - which she has - are infuriating as they give people a false idea of the process.

After agonizing over the decision she finally had an implant done in her right ear, but it delivers digitized voices that never sound right.

'When I was first implanted, I felt like, ‘What the f—k have I done?’
All the residual hearing in my right ear has gone, and now I have this
weird, f—ked-up Mickey Mouse voice in my head. And everyone says it’s
like a journey.'

Alexandra would argue that it's more 'a s—tload' of hard work.

Speaking of, she's in for a lot more of that next July when she crosses off one of her last goals before she loses the remainder of her sight.